I started this conversation as I was interested in the medications others are currently receiving for their Raynaud's. So far there have been no answers to my discussion, so I thought I'd blog about my own experience in hopes someone else will let me in on theirs.
It's been a long time since I actually tried treating my Raynaud's. Years ago Calcium Channel Blockers were my friend for a while, but long-term, nothing really worked. I basically learned to live with it. My usual goal is to avoid triggering it. Of course, those of you with the condition know this is virtually impossible in the real world, but we do our best.
Last spring I experienced some very severe attacks - worse than ever before. The pain was tremendous and long-lasting, and I was very lucky I did not suffer extreme tissue destruction. The Raynaud's was pretty normal for me everywhere else, but I was also very lucky that the prolonged and severe vasospasms were especially bad in only a very small spot on the end of one toe. As a result, to try to keep me from losing the end of a digit, my PCP decided to try something a little different.
* Norvasc 2.5 mgs
* Persantine 75 mgs
This is a combination of a newer drug, and an old drug. The Norvasc (amlodipine) is a calcium channel blocker. This means its job is to disrupt the normal flow of calcium in and out of cells. It's usual use is to lower blood pressure. The Persantine (dipyradimole) is a platelet inhibitor. This means it inhibits the formation of blood clots. For this reason it is frequently used on patients who have had heart valve surgery. Unfortunately, it is also used to expand coronary arteries for chemical stress tests. This is good for Raynaud's, bad for Migraine.
Fortunately, both medicines are sometimes useful as Migraine preventives too. Since this is nearly a daily issue with me, I'm hopeful that maybe I'll finally get lucky and find something to lower the severity and number of Migraine days I endure. Unfortunately, "headache" is listed as potential side effects for both medications, leaving me a little afraid to try them.
My doctor tells me that unfortunately, most doctors aren't aware of the benefits of some of the older medicines useful in Raynaud's, as patents run out and they fall out of favor when newer drugs are introduced. In this case, the two drugs I'm told work synergistically together... this means that the two together are more powerful than either one by themselves.
How I begin a clinical trial of any new medicine
Because the weather radically and quickly changed, I did not have to try this new combination last spring. We're keeping it in our back pockets as this fall begins to cool off. My hands and feet have been bluer than normal - even purple - so I am a bit concerned. That being said, I have not yet begun the meds because I'm usually wary of new things. I don't always react to them very well. I wait until I have no plans for several days, then begin a new med at half dose, recording when and how I am taking it and my other meds, as well as any changes in my condition or possible side-effects etc. My family is aware I'm trying something new, so that way if I become sick they are well aware what is going on. In this case, because I do not currently have a neurologist and Migraines may worsen to the point of going out of control, I'll let my pcp know as well, so he can be prepared in case of a Migraine emergency.
Questions for other autoimmunies
I'm told there are other drug combinations that might be useful for autoimmunies that suffer Raynaud's. What are you taking? What are you seeing in your communities? Has this particular combination of drugs been mentioned anywhere that you've seen yet?
What tips do you have to offer other Raynaud's patients re: avoiding triggers?